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Episode 13 – Learn about ME and Multi Morbidities

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Episode 13 – Learn about ME and Multi Morbidities

In this thirteenth episode we discuss other health conditions that can occur alongside a diagnosis of Myalgic Encephalomyelitis (ME) or Long Covid. It’s estimated that between 75% and 91% of people with ME also have another condition.[1]

Common morbidities are Postural Orthostatic Tachycardia Syndrome (PoTS) and Mast Cell Activation Syndrome (MCAS). 

In this episode, our guests Dr Amy Small and Mary McGowan share their insights and experiences of the impact of the interaction of these health conditions with ME or Long Covid. 

Dr Small outlines an approach towards treating these conditions that highlights the importance of being curious about what is going on in that person’s life and exploring how post exertional malaise (PEM) is affecting them. With PEM, the impact may show up days after an activity. So, giving information on pacing and how to conserve energy is key to supporting the person to manage their health and energy. 

Symptoms of PoTS can mimic anxiety, so GPs need to explore these types of symptoms. This may take more time than a standard appointment. We also discuss what adjustments could be offered by GPs to build a relationship with the patient over time, taking a light touch approach. Mary asks that GPs educate themselves about these conditions and to plan and review the care, taking a holistic view. 

Clinical cases on these conditions were added in the recent update to Learna’s free continuing professional development (CPD) module on ME/CFS, which this podcast series was produced to complement.

 Resources


 



[1] Jesús Castro-Marrero Ph.D. a, Mónica Faro M.D. a, Luisa Aliste Ph.D. a, Naia Sáez-Francàs M.D., Ph.D. b, Natalia Calvo Ph.D. c, Alba Martínez-Martínez M.Sc a, Tomás Fernández de Sevilla M.D., Ph.D. a, Jose Alegre M.D., Ph.D. a. (September–October 2017). Comorbidity in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: A Nationwide Population-Based Cohort Study. Psychosomatics Volume 58, (Issue 5), September–October 2017, Pages 533-543. Available at Doi: https://doi.org/10.1016/j.psym.2017.04.010
 
 

[00:00:00] Clare Ogden: Hello and welcome to the Learn About ME podcast series. Thank you for tuning in today. I'm your host, Claire Ogden, Head of Support Services at Action for ME, a UK charity supporting children and adults with Myalgic Encephalomyelitis or ME. Today's episode is Learn About ME and Multi Morbidities our 13th podcast in this Learn About ME series, this episode follows Dr.

[00:00:29] Nina Muirhead's recent update of her free highly rated CPD learner module on ME. The module highlights DecodeME's, recent breakthrough in genetic research, which is starting to map reproducible genetic risk patterns and shared biology with long COVID Nina's updates also highlight how endocrine meta-analysis show a hypoactive cortisol system in ME.

[00:00:54] In addition, Cerebro spinal fluid proteomics and cytokine signatures strengthen the case for immune, vascular and coagulation involvement in ME, especially in more severe cases and POTS subgroups. You can find links to the whole podcast series on Buzzsprout and Spotify along with Learn About ME Webinars and Nina's CPD module at https://www.actionforme.org.uk/resource/professional-development-for-me/.

[00:01:25] All these great resources are free and will help you feel more confident in diagnosing and supporting your patients. We're sharing them as part of our Learn About ME Medical Education Project funded by the Scottish Government. Our guests today are Dr. Amy Small and Mary McGowan. Amy is a GP and the clinical advisor for Chest, heart and Stroke Scotland.

[00:01:46] Amy became an advocate for people living with long COVID after becoming unwell herself and going on to develop pots. Mary has been living with me and Dysautonomia since 2006. She is a writer and recently contributed to what is ME is like. A book she hopes will be useful to healthcare practitioners, especially GPs.

[00:02:08] Amy, what are the key takeaways from the latest research and evidence in this area that you think GPS should know about in their practise?

[00:02:16] Dr. Amy Small: One of the things that's been really interesting is the relationship of the dysautonomic conditions that are linked to these post viral illnesses. So what we've seen now, particularly with long COVID, which I think then lots of people with ME are piping up going, I've had this for years, is that any of these sort of post viral infective illnesses seem to be affecting the autonomic nervous system, that they're affecting our, our brains, inflammation in the body and that is causing people to be physically unwell.

[00:02:41] I think we have to move away from this psychological thing that's been banded around for years and actually there are now biophysical markers that are, are apparently there that we can look and monitor and we have treatments, we can treat pots, there are medications out there to treat it. And so I think we need to move away from that era of, oh, you've got ME, terribly sorry to actually, what is it you are feeling?

[00:03:05] Are you breathless? Are you tachycardic? Is it worse when you're doing stuff? Is it worse when you stand up exploring some of the other issues. And again, with things like mc a, which again, we can treat, do you have gut issues? Do you have skin issues, do you have all sorts of other bits and pain and whatnot, and can we tentatively try some medications?

[00:03:26] So I think really looking more at these aspects of treatments that are available and not just focusing perhaps in the past on psychological issues, yes, cognitive behavioural therapy can be helpful for some aspects of managing the symptoms that we get. And we know that that pain can be relatively responsive to CBT.

[00:03:48] We know there are other distressing aspects of living with a disability that can be helped with CBT, but CBT isn't the sole answer and the sole treatment for any of these conditions and needs to be used in conjunction with support from occupational therapists that can provide support with pacing physios who might be able to support in regimens that are sensible and adapted and aware of post exertional relays for various conditions.

[00:04:19] Clare Ogden: What do GPs need to know about me and long COVID and some of the common multi morbidities like pots and mast cell activation syndrome or MCAS.

[00:04:29] Dr. Amy Small: I think it's a really interesting question because many GPs will have heard of ME, of course, heard of chronic fatigue syndrome. Now will have heard of long COVID.

[00:04:36] There are still many GPs who aren't aware of MCAS. That's still a very new phenomenon for GPs. And POTS as well will be heard in some quarters and not familiar to all. And I think we need to look back a bit because the vast majority of us won't have even learned about it at medical school. This is not something that is in our curriculum, that is not something that is dedicated to, and it's really something that needs to come into medical school.

[00:05:01] Curriculum needs to come in from the get go from the beginning for people to understand that it's very much a biological illness, it's not a psychological one. And that this is something that can happen to a broad spectrum of people at any time in their lives, from children through to the elderly. The thing I think has been really interesting with long COVID, particularly 'cause so many doctors have been affected by it and healthcare professionals, that this has kind of really lifted the lid on some of this and I think propelled it into the forefront.

[00:05:31] And it's a really sad thing to have to say that this is what it's taken to get to that point. But actually when huge swaths of healthcare professionals have been affected by this, this has now really made people sit up and listen and go, oh, it's not just 'cause you're a bit tired. And so the thing I'm always saying to my colleagues in every forum that I'm in is be curious what you don't understand.

[00:05:52] Don't shy away from, don't hunker down and get afraid by it, but actually reach out, be curious. Try to find out what's going on in that person's life. So what I want my colleagues to do is to really understand what post exertional malaise means, what that feels like, how that can affect a whole person's being, every aspect of their life.

[00:06:12] And that it's not a psychological problem. I myself, as a GP, when I was working just post pandemic, saw quite a few people who'd been diagnosed with anxiety over the phone and I brought them in and I examined them and they were really tachycardic. A lot of them were women, some were men, but there were a lot of women.

[00:06:30] And a lot of the symptoms of pots, which is postural orthostatic tachycardic syndrome, can mimic anxiety. And people go to what they know, they go to what they feel comfortable they go to, what they've learned about and what the support services are out there. But I'm quite unusual in that I have an own interest in area of expertise there where I could do that.

[00:06:50] But the vast majority of GPs don't have that comfortableness with it because there aren't any support services. They never learned about it. And really what we need a dedicated system, support systems in secondary care there to support general practise to help not only see these patients but educate patients and colleagues around us.

[00:07:07] Clare Ogden: So how can GPs support someone with ME and these other less known conditions,

[00:07:13] Dr. Amy Small: general practices are under a huge amount of pressure to meet access targets, that whole sort of continuity of care and having time to follow patient through from cradle to grave that's been eroded by sequential governments who've just been focusing on access.

[00:07:27] We live in a very Amazon prime culture where we must have everything now and sadly that's the way things have moved. A colleague the other day said to me, I've got someone with long COVID Amy. I know that's something that you know about. Would you see him? And I said, to be honest, I'd really need at least a double or a triple appointment as a get go just to be able to find out where that patient's at, hear how they are affected, hear about their whole lives.

[00:07:52] Because we can sit and talk about symptoms and that's important in one aspect, but it's also that bigger disability aspect, the distress that's caused by the illness, what, what else is going on in that person's life so that I can piece all the puzzles together and we can together work out what's important to that patient, what do they want to address, what aspect of their illness do they want to target first?

[00:08:13] And then I will bring those patients back to see me, whether it's two weeks, three weeks, a month later, three months later and maybe I won't bring them back physically 'cause I know that that might be really fatiguing. Maybe I will do stuff over the phone with them. I quite often like pre-emptively text my patients, I can set it up so that they can text me back a month later and it will just say, how's it going?

[00:08:33] And they can either go, I've got nothing I need to speak to you about this month, but can you text me next month? Or they'll say, actually can you gimme a ring? And then I'll try and fit them in. But of course I can't do that for everyone. But I think this is the thing, it's about trying to build those relationships and really find out what matters to that patient.

[00:08:50] And I think that the GPs really to understand, I was of an era where my education was based on the PACE trial and I was taught that patients needed to do graded exercise. So I've spent a long time since I've learned more about this, telling my colleagues that graded exercise is really damaging. And actually what is post exertional malaise?

[00:09:10] How does that feel for a patient? How does it affect them? Did that GP know that you could go for a walk one day and two days later be in bed as a consequence? Because I think people don't really understand how delayed post exertional malaise can be, how much a patient can be affected by that. So it's trying to get across that message.

[00:09:28] And it wasn't until I got ill with long COVID that I understood that pacing didn't mean just doing stuff so slowly. It really meant planning, prioritising what I had to do and pacing my way slowly through the day. But I needed support with that. I needed someone to educate me through that. I learned it from a book because that's what I had available to me at the time.

[00:09:45] But actually that there are support services out there or OTs who are expertise in this, who can really help guide patients through what pacing truly means and how that can help people to live within an energy envelope that works for them.

[00:10:00] Clare Ogden: Amy, is there anything else you'd like to add that we haven't covered today?

[00:10:03] Dr. Amy Small: I guess it's just an acknowledgement of how much getting ill myself has changed who I am as a doctor and really the doctor that I was before I got long COVID versus the doctor I am afterwards are, are two very different people. And the doctor that I was before wasn't, wasn't a bad doctor, I wasn't mean or horrible or anything like that.

[00:10:24] I just didn't know. I just didn't understand. I didn't have that empathy. I had sympathy, but I didn't have that empathy that I have now that I fully understand what someone living with a chronic disease is like. And I think I've reflected on the fact that I was recently diagnosed with MS. Multiple Sclerosis and I've seen my journey through that and the pathways that are present there for that.

[00:10:50] And even though that's been a somewhat of a struggle because I'm a woman and who believes women, but uh, and I had very sensory symptoms, but there were clear pathways. Oh, you've got this, you get a scan, then you've part of an MDT and you've got a nurse that looks after you and you've got a consultant and you've got treatments and you've got charities left, right and centre that can support you.

[00:11:10] And there was very much a pathway there to support me. Whereas I think the thing that's really challenging for people with any of these other illnesses, ME, CFS, Long COVID, pots, whatever, is that your journey is, it's not straightforward and you present several times with different things and you're constantly fighting an uphill battle trying to prove that you're ill and trying to show people what's going on.

[00:11:31] And so I think it's just really for healthcare professionals for us to recognise that pathways are really helpful for patients, to really guide them in the right direction to get the supports they need. And it doesn't have to be a long COVID pathway or ME pathway or whatever, like I think chronic disease pathways in themselves can be really helpful provided you've got people with open minds and expertise to support people living with these things.

[00:11:54] A lot of that comes from that own experience. And I guess that's what I'm saying is that pre COVID me didn't understand this, but post COVID me has seen it in a very different way. And I always say I'm sorry to my patients for if I ever said anything wrong. You know, in the past I, I just didn't know it wasn't, you know, on purpose.

[00:12:13] But hopefully, as I said, sadly, the pandemic, you know, has meant that many, many, many healthcare professional professionals have got ill, but that hopefully will lead to a better future for people like us living with these conditions.

[00:12:27] Clare Ogden: Thank you, Amy. Mary, what do you feel would've helped you when you first became ill and thought it might be something other than ME?

[00:12:37] Is there a way your GP could have supported you differently that might have made a difference to how your new condition developed and how you manage ME now?

[00:12:46] Mary McGowen: Well, my situation's maybe a wee bit different from the norm that because within six months of becoming ill, in 2006, I had diagnosis of post viral fatigue syndrome and an overreactive autonomic nervous system.

[00:13:02] So dysautonomia was part of my picture from the very outset, and that's because perhaps unusually, I presented with cardiac symptoms rather than fatigue. And a cardiologist took a keen interest in my case, I stabilised, or at least the autonomic symptoms stabilised a good bit until roundabout 2013 when I deteriorated, I think because of a reaction to a flu vaccination at that stage, I think it would've been very helpful to have been re-referred to cardiology.

[00:13:38] Unfortunately, that coincided with me losing my job and having to move house. So my health took a back seat at that stage. I also joined a new GP surgery where they didn't know me and couldn't really help me. One of the problems with tachycardia and the tachy arrhythmia episodes that I suffer from is that they don't show up unless you're actually having an episode at the time.

[00:14:05] And also beta blockers were rolled out because I had asthma. So I struggled on until it got much worse, very much worse after the COVID vaccinations when the, the tachy episodes increased in duration and frequency. And that led to two weeks in coronary care where the team there worked really hard. And I now have a regime which prevents these episodes.

[00:14:29] But it was at that point that I was diagnosed with suspected pots, postural orthostatic tachycardia syndrome. And what really would've helped them and would've helped my GP too, was for there to be specialist services to help guide me in managing the pots symptoms. 

Clare Ogden: What is missing from your current healthcare that could make a real difference to your health and quality of life?

[00:14:55] I think there are three connected aspects here. The first is education. That's absolutely fundamental. I would like my GP practice to have the relevant education, knowledge and insight about ME, dysautonomia and MCAS, and to be able to take the lead. I would really like them to know more about it than I do.

[00:15:20] So that they can then make my life better for me and not have me feeling that I'm asking them for something which is beyond their ken. And then secondly, I would like to have a plan, if not a treatment plan, then at least regular reviews, basic tests, discussion about any new symptoms that may have arisen to see whether they're attributable to ME or not, reviews of medications.

[00:15:49] Perhaps in my particular circumstances, a regular ECG because of the medication I'm taking. And I would really love if at least some of this could be done at home. I haven't seen my GP in person since 2019 because they won't conduct home visits. And the third aspect that would really be helpful, and I think particularly helpful for GPs is to have specialist services.

[00:16:20] It's very disappointing that the best my GP could offer me when I was tentatively diagnosed with POTS was advice to read the POTS UK website. And that was it. And of course, that was something I'd already done. What I was looking for was advice tailored to my individual circumstances. Instead, I've largely been left to my own devices.

[00:16:44] POTS is a known and treatable condition, and it's frankly shocking that there isn't a single specialist in Scotland. Certainly in the NHS. In particular, people who have ME need to be very careful when it comes to exercising. And of course, the advice to exercise is a big component When treating Pots.

[00:17:11] Clare Ogden: What key thing would you like GPs to understand about conditions like ME, long COVID pots or mast cell activation syndrome?

[00:17:21] Mary McGowen: I would like doctors to know that we're not a collection of symptoms, but a group of people whose lives have been devastated. Even in the mildest cases, quality of life is poor and we are turning to them for help. I'd like our doctors to demonstrate knowledge, understanding, and insight, especially recognising post exertional Malise and be proactive in guiding their patients.

[00:17:52] I'd like them to take the lead in prescribing rest, especially where people require to overcome their natural inclination to exercise or go about their lives as they normally do. I think emphasising the dangers involved with PEM is absolutely imperative. And if doctors would advise people to avoid pem at all costs, because even if there are no treatments, doctors play a vital role in ensuring that people don't get worse by exceeding their capabilities.

[00:18:27] I think to do this, it would be helpful for doctors to learn as much as they can about ME, pots, MCAS, and so on. I'm part of a group of writers with ME. We recognise that ME isn't taught as part of the curriculum, so we set out to fill the gap and I've published a book called What Is ME Like, which contains 80 accounts from people with ME and their carers about the daily realities and challenges of living with ME.

[00:18:59] I would urge all healthcare professionals to read the book to get a real picture of the degree of debilitation and the shocking impairment to quality of life. I expect that doctors and other healthcare professionals might have increased confidence in forming beneficial partnerships with us, with a view to faster diagnosis, better healthcare, and also really importantly, adding their voices to the calls for more research and specialist services.

[00:19:33] Clare Ogden: Thank you to Amy and Mary for joining us today. For more information on Managing ME, please check out the links at https://www.actionforme.org.uk/resource/professional-development-for-me/. These include a link to the 2021 Nice guideline for ME, the official guidance now being used in Scotland. I'm Claire Ogden and this has been Learn About ME and Multi morbidities podcast.

[00:19:58] Thank you to our project partners, ME Action Scotland, ME Association, and Dr. Nina Muirhead for their support in developing this podcast and to you for taking the time to listen today. This podcast was produced by Zoe Anderson.